From August 4th through September 5th, Members of Congress will be in their home districts. It is during this time we will be scheduling meetings for rare disease advocates. On July 8th & July 22nd we have webinars scheduled that will assist advocates in the process.

Join Us to Ensure the Rare Disease Community is Heard This Summer

During the summer recess, Members of Congress return to their home states to hear from constituents and attend community events.  Meeting with them during this time is a critical opportunity for rare disease advocates to build relationships, educate them on key legislative needs and follow-up on requests made during Rare Disease Week on Capitol Hill or phone calls or emails about legislative issues since then.

As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th.  Registration is free and available online through Friday, July 15thYou can specify when you are available during the summer recess and how far you are willing to travel for a meeting.

This is a critical juncture for our community.  Although the 21st Century Cures Act passed the House of Representatives with broad bipartisan support last July, the Senate has yet to pass the companion legislation.  In the current partisan environment in Washington, it is important for Members of Congress to hear first-hand how united the American public is on the subject of medical innovation.  A recent poll found that 78% of Americans think Congress should prioritize fostering medical innovations, with an emphasis on finding cures for diseases that still lack treatments.  By joining us for In-District Lobby Days, you can urge your Senators and Representatives to support 21st Century Cures and advocate for other legislation benefiting our community.

To register for In-District Lobby Days, please click HERE.  RDLA will use the information you provided to schedule meetings for you, and help you prepare by providing key background materials and hosting a preparatory webinar to be held on July 13th.

It is up to each of us to ensure the voices of rare disease patients and caregivers are heard in Washington.  Please help us tell Congress loud and clear:  WE NEED CURES NOW!

Nominations for Fifth Annual RareVoice Awards Due by July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.

Nomination categories include:

Congressional Staff

Has a staff member of a member of the U.S. House, Senate or Congressional committee been instrumental in helping to create and/or advance legislation that benefits the rare disease community?

Government Agency Staff

Do you know a government agency staff member who has gone out of his or her to listen to rare disease patients and then taken action to benefit the community?

Patient Advocate – Federal Level Advocacy

Do you know an advocate or organization that has worked with Congress or federal agencies to spearhead change on behalf of the rare disease community?

Patient Advocate – State Level Advocacy

Do you know an advocate or organization that has crusaded on the state level to support and advance rare disease legislation or regulatory reform?

RareVoice Award nominations are open to the public. Winners will be selected by an independent committee composed of representatives from the rare disease community including previous RareVoice winners.

To nominate a rare disease champion, please click HERE. Nominations close on July 31st, 2016.

The winners will be announced LIVE at the fifth annual RareVoice Awards ceremony on November 16that the Arena Stage in Washington, DC and will receive the coveted Abbey award.

The award is named after Abbey Meyers, the founder of the National Organization for Rare Disorders (NORD), and represents the “rare voice” speaking on behalf of patients, especially children, who might not otherwise be heard. The Abbey statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe, who crafts each statue by hand in bronze.

Rare Disease Legislative Advocates’ North-East Conference

 

Monday, July 20, 2015

Stanley Bergen Building, Rutgers University, Newark, NJ

Rare disease patient advocates and other stakeholders from the rare disease community came together on Monday, July 20th, 2015 in Newark, NJ for our inaugural North-East Legislative Conference. The goal of our new regional legislative conferences was to update advocates about important legislation advancing through Congress and to prepare them to meet with their Representatives during August Recess.
This year Congress is working on legislation that will have a huge impact on drug development and approval, and as a community we must join together to ensure the legislation benefits rare disease patients and is passed in both the House and the Senate.

 

 

This event was a great success view photos here:
RDLA-NEConf-talking rare diseases
RDLA-NEConf-setup
RDLA-NEConf-pallone in audienceRDLA-NEConf-lanceRDLA-NEConf-lance advocatesRDLA-NEConf-juliapalloneschillionsRDLA-NEConf-eatingRDLA-NEConf-dvocacy panelRDLA-NEConf-andy and advocatesDean P NE confNE Conf hinj
Pallone speaking Jill Wood Rutgers dean
Mike Illions thumbs up
Co-Hosted by: 

 

Thank you to our sponsors:NJ Leg Conf Logo Mashup 7.13.3

In-District Lobby Days

One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days

For help and questions contact Andy Russell @ 415 884-0223, arussell@everylifefoundation.org

 July 11th Deadline to Register to Participate Read more